Aa
He still drinks
My husband has diagnosed with chronic hep c. We do not know where he is as far as advancement with the disease.7 years ago he had a biopsy and they said he had bridging fibrosis. At the time that wasn't bad, but now I am reading they consider it much worse than they use to. After diagnosis about 8 years ago, do to his genotype, and its cure rate at the time... he decided against treatment, and has just been getting yearly blood work. He is asymptomatic, with the exception of some fatigue. The main problem is he still drinks. He just quit drinking the hard stuff and started drinking beer. I am concerned, but he is very hard headed. He read somewhere that as long as his bilirubin is good he's ok, and I can't seem to get him past that. His bilirubin is currantly 0.4... AST 39 (down from 51)...ALT 59 (down from 181)...2,742,200 (up from 1,980,000) HCV log10(whatever that is) 6.438 up from 6.3.
Any suggestions or links would be greatly appreciated. I have got to get him on the right track, but first I have to make him understand he has a serious problem, and it is getting worse. I am afraid he is not going to feel sick until it is to late, and since he doesn't feel bad then he is not going to address it. I really need input.
Thanks
Wanda
Any suggestions or links would be greatly appreciated. I have got to get him on the right track, but first I have to make him understand he has a serious problem, and it is getting worse. I am afraid he is not going to feel sick until it is to late, and since he doesn't feel bad then he is not going to address it. I really need input.
Thanks
Wanda
You might want to go up to the top and start another thread since this one is from 2008-There are some very intelligent people here who can help you.
Go to the top of the page,hit "post a question" and title it and type away.Your husband HAS definatly got to stop drinking-it will only make things worse and they wont even consider him for a transplant unless hes been sober for awhile.He can do it !!!!
Go to the top of the page,hit "post a question" and title it and type away.Your husband HAS definatly got to stop drinking-it will only make things worse and they wont even consider him for a transplant unless hes been sober for awhile.He can do it !!!!
OMG. I don't know how I found this site but I am so thankful I did. I am living your nightmare right now. Hubby had seizure in 2007. Spent 5 days in ICU. Diagnosed with Hep C and Cirr. Started going to a gastro doc. Was agreeing to do testing and everything was going along smoothly. Came time for the biopsy and everything came to a hault. The doc then wanted to put him on the transplant lisit, but no go. Hasn't been back to any kind of doc since. Stayed sober for 2 years. Then started drinking beer small amounts at first, he is now drinking about 20 beers a day plus some hard liquor a few times a week. About 2 fifths of 100 proof . He has all the symptoms of end stage liver disease plus i see signs of hepatic encephalopathy. I had no idea about this condition till I read your post. Please help me understand the things I need to be looking for. I am at a loss as what to look for or even do for that matter. My email is ***@****
So sorry to hear about your friend. Six years certainly is a short amount of time in comparison to the length of time many have been dealing with this.
Again, sorry for your loss.
~Grace
Again, sorry for your loss.
~Grace
just to add another no alcohol story...
my friend bill died last week, liver failure/kidney failure/stroke complications all related to the hep-c and drinking and smoking to much and lots of pain meds
he was diagnosed 6 years ago so it didnt take long
my friend bill died last week, liver failure/kidney failure/stroke complications all related to the hep-c and drinking and smoking to much and lots of pain meds
he was diagnosed 6 years ago so it didnt take long
That's an incredible story. It's great that he finally saw the writing on the wall and is taking positive steps. Good luck to you and him as you go on in the process. Blood sugar abnormalities are common in people with hcv. Many people on the forum are dealing with it, even after treatment.
Holy Cow! I just read what Hepatic Encephalopathy is! He's had some memory problems, but I can't tell if it is the liver or booze.
He does complain of indigestion, but not a lot...however he will get up in the middle of the night and drink milk.
His sugar is elevated...the doc is watching that. I had no idea Hep C could lead to that. We assumed it was because he dad was a diabetic. His dad was a severe diabetic, causing him to have to have a liver transplant and die at around 67 with kidney failure.
He does complain of indigestion, but not a lot...however he will get up in the middle of the night and drink milk.
His sugar is elevated...the doc is watching that. I had no idea Hep C could lead to that. We assumed it was because he dad was a diabetic. His dad was a severe diabetic, causing him to have to have a liver transplant and die at around 67 with kidney failure.
My experience with my husband sounds very much like yours.
My husband was diagnosed with HepC 16 yrs. ago but since he felt perfectly fine it was hard for him to believe he was ill. Therefore he continued on with his life...which included drinking daily.
For a period of about 8 yrs. he would go to the dr. every 6 mos and have follow up blood tests done. During those 8 yrs. his liver enzyme levels remained unchanged. He got it in his head that the dr. was making a big deal over nothing and he stopped getting the rechecks done.
I tried EVERYTHING I could think of to get him to continue with the rechecks as well as continued my efforts to get him to stop drinking or at least decrease the amount he drank. I printed off copious amounts of information I found on the internet about HepC and drinking. He'd read it, say he felt AOK and go right on doing what he was doing.
Five years ago he began to have constant indigestion so he went to our family dr., who we'd recently began to see. She did a complete physcial on him. He did not disclose to her that he had been diagnosed with HepC. He wanted to see if it would show up in any test. Remember he was still convinced the earlier dr. was full of **** and he was just fine.
Two days later her office called and she wanted to see him ASAP. His liver enzymes were off the charts, his platelets were extremely low as well as there were indications that he was diabetic.
I decided that the man could not be trusted to go to the dr. alone since he wasn't being honest with her and I went to the recheck with him and spelled it all out to her in black and white. The diagnoses of HepC 11 yrs. earlier, the continued abuse of alcohol including how much that I was aware of (he had told her he drank occasionally ha). After she dressed him down for failing to tell her of his prior diagnoses she scheduled a liver ultrasound and follow up with a gastroentrologist and further testing for the possible diabetes.
At that time he had mild inflammation of the liver. He was determined to be a diabetic and in addition to the medication for diabetes he was put on Protonix for the indigestion. He was also diagnosed with Atrial Fibrillation and put on meds for that.
With all that he still continued to drink. This is when I finally understood that he was an alcoholic not just a drinker and that if he was to stop drinking he was going to need help. So I began to encourage him to get that help. He ignored me.
On February 15th of this year he finally got slapped upside the head with reality. He ended up in the hospital very close to being in a coma with Hepatic Encephalopathy. I had never heard of this and had I known what to look for I would've realized a couple of weeks prior to his hospitalization what was happening to him. I just thought he was drinking more and that the symptoms I was seeing were totally due to the excess drinking. They were...but there were also signs that his liver was shutting down.
He remained in the hospital until the dr. was sure he had gone through alcohol withdrawal (not a pretty sight) and of course until his ammonia level was back under control.
While he was hospitalized I made arrangements for him to begin counseling with a substance abuse counselor. This near death experience FINALLY opened my husbands eyes and he has not had a drink since the night before he went into the hospital. He is scheduled for a liver biopsy in 2 wks. They didn't schedule it any earlier because of how low his platelets had gotten. Now his liver enzymes are back in normal ranges, his platelets have come up and his ammonia levels are being maintained with Lactulose. He has lost over 30 lbs and as a result he has recently come off his Byetta for his diabetes. While many things are much improved the liver biopsy will tell the tale.
Maybe you can share my husband's story with yours and he will see himself in these words.
Good luck to you.
~Grace
My husband was diagnosed with HepC 16 yrs. ago but since he felt perfectly fine it was hard for him to believe he was ill. Therefore he continued on with his life...which included drinking daily.
For a period of about 8 yrs. he would go to the dr. every 6 mos and have follow up blood tests done. During those 8 yrs. his liver enzyme levels remained unchanged. He got it in his head that the dr. was making a big deal over nothing and he stopped getting the rechecks done.
I tried EVERYTHING I could think of to get him to continue with the rechecks as well as continued my efforts to get him to stop drinking or at least decrease the amount he drank. I printed off copious amounts of information I found on the internet about HepC and drinking. He'd read it, say he felt AOK and go right on doing what he was doing.
Five years ago he began to have constant indigestion so he went to our family dr., who we'd recently began to see. She did a complete physcial on him. He did not disclose to her that he had been diagnosed with HepC. He wanted to see if it would show up in any test. Remember he was still convinced the earlier dr. was full of **** and he was just fine.
Two days later her office called and she wanted to see him ASAP. His liver enzymes were off the charts, his platelets were extremely low as well as there were indications that he was diabetic.
I decided that the man could not be trusted to go to the dr. alone since he wasn't being honest with her and I went to the recheck with him and spelled it all out to her in black and white. The diagnoses of HepC 11 yrs. earlier, the continued abuse of alcohol including how much that I was aware of (he had told her he drank occasionally ha). After she dressed him down for failing to tell her of his prior diagnoses she scheduled a liver ultrasound and follow up with a gastroentrologist and further testing for the possible diabetes.
At that time he had mild inflammation of the liver. He was determined to be a diabetic and in addition to the medication for diabetes he was put on Protonix for the indigestion. He was also diagnosed with Atrial Fibrillation and put on meds for that.
With all that he still continued to drink. This is when I finally understood that he was an alcoholic not just a drinker and that if he was to stop drinking he was going to need help. So I began to encourage him to get that help. He ignored me.
On February 15th of this year he finally got slapped upside the head with reality. He ended up in the hospital very close to being in a coma with Hepatic Encephalopathy. I had never heard of this and had I known what to look for I would've realized a couple of weeks prior to his hospitalization what was happening to him. I just thought he was drinking more and that the symptoms I was seeing were totally due to the excess drinking. They were...but there were also signs that his liver was shutting down.
He remained in the hospital until the dr. was sure he had gone through alcohol withdrawal (not a pretty sight) and of course until his ammonia level was back under control.
While he was hospitalized I made arrangements for him to begin counseling with a substance abuse counselor. This near death experience FINALLY opened my husbands eyes and he has not had a drink since the night before he went into the hospital. He is scheduled for a liver biopsy in 2 wks. They didn't schedule it any earlier because of how low his platelets had gotten. Now his liver enzymes are back in normal ranges, his platelets have come up and his ammonia levels are being maintained with Lactulose. He has lost over 30 lbs and as a result he has recently come off his Byetta for his diabetes. While many things are much improved the liver biopsy will tell the tale.
Maybe you can share my husband's story with yours and he will see himself in these words.
Good luck to you.
~Grace
Thanks again.
He is the type that does not respond to treatment well.
Wonderful wife is becoming pissed wife :(
He is the type that does not respond to treatment well.
Wonderful wife is becoming pissed wife :(
Some doctors are just not meant to be in the profession. Saying that his geno dictates he can watch and wait is one thing and probably means he is genotype 2 BUT they usually don't even biopsy a 2 so you wouldn't know he had "bridging fibrosis". That in its own makes him a stage 3 and almost cirrhotic seven years ago!
So you see why it might be better to search out another doctor. My original doctor told me that my ultrasound was "perfect" and I didn't need to treat. Well...I had no idea that meant I just had no tumors.....that the ultrasound didn't tell whether or not you had fibrosis. So needless to say when I switched docs and found out that I was stage 3 I was pretty shocked. Pissed too!
Tell your husband that there are a lot of people in here who really truly understand exactly what he is going through and how easy it is to live in denial of what is going on. Heck we ALL wanted to do it! However they DO call this disease the SILENT KILLER becuase you can go through all of the stages of liver damage and not have one symptom until the very end when it's too late in the game to do anything except transplant and treat. you don't want to have to do that if you don't have to. it's a much eaiser road to JUST do the treatment.
Good luck to you - you are a wonderful wife and he is so very lucky to have you. I wish I'd had as loving and supportive spouse...I tell you that!
So you see why it might be better to search out another doctor. My original doctor told me that my ultrasound was "perfect" and I didn't need to treat. Well...I had no idea that meant I just had no tumors.....that the ultrasound didn't tell whether or not you had fibrosis. So needless to say when I switched docs and found out that I was stage 3 I was pretty shocked. Pissed too!
Tell your husband that there are a lot of people in here who really truly understand exactly what he is going through and how easy it is to live in denial of what is going on. Heck we ALL wanted to do it! However they DO call this disease the SILENT KILLER becuase you can go through all of the stages of liver damage and not have one symptom until the very end when it's too late in the game to do anything except transplant and treat. you don't want to have to do that if you don't have to. it's a much eaiser road to JUST do the treatment.
Good luck to you - you are a wonderful wife and he is so very lucky to have you. I wish I'd had as loving and supportive spouse...I tell you that!
I don't think they graded it 7 years ago like they do now. No one certainly told him he was in stage 3! They just said he had some liver damage with mild bridging fibrosis. The report read like...oh well... you have a pimple.
But I do know that there is a guy here at my office with the same doctor my husband had. This doctor told him that since he was not symptomatic that with his genotype that he could watch and wait for better treatment also. This guys viral load is 2mil higher than my husband, and he has not even had his liver biopsy.
I just don't get it. Are doctor's mediums, and they can just tell who will make it and who won't. Who it is worth the effort and who is not.
His drinking...He quit for about 8 months after dianosis. Now I bet he drinks a 12 pac a day, and smokes his weed too. I love the man, but I don't know if I can stand back and watch him kill himself.
I do not think the doctors know exactally how much he drinks.
I am going to print some stuff about what I have found out in this forum and just lay it on his desk. Then see what happens.
But I do know that there is a guy here at my office with the same doctor my husband had. This doctor told him that since he was not symptomatic that with his genotype that he could watch and wait for better treatment also. This guys viral load is 2mil higher than my husband, and he has not even had his liver biopsy.
I just don't get it. Are doctor's mediums, and they can just tell who will make it and who won't. Who it is worth the effort and who is not.
His drinking...He quit for about 8 months after dianosis. Now I bet he drinks a 12 pac a day, and smokes his weed too. I love the man, but I don't know if I can stand back and watch him kill himself.
I do not think the doctors know exactally how much he drinks.
I am going to print some stuff about what I have found out in this forum and just lay it on his desk. Then see what happens.
Hopefully the sign that his ALT went DOWN is not a BAD thing. Quite opposite to the information you would think... if he was a stage 3 back 7 years ago and has continued to drink he could be into cirrhosis and then the numbers would drop sheerly because there is a lot less liver tissue to kill.
You do realize what those Alt/Ast numbers mean? When a liver cell dies it releases an "enzyme". So...the higher the enzyme number the more cell death. As you can see if there was a good deal of irreversible liver damage already done ... the number could go DOWN.
I was the same diagnosis as your husband. I went to two doctors one of whom is one of the leading heptologists in the world. At stage 3 there is really no time to wait. One more stage until cirrhosis. I was advised to treat immediately and as hard as I could. I ended up doing 72 weeks.
I find it hard to believe that any doctor could responsibly suggest to you that a stage 3 who continues to drink need not treat. The only reason I can think that he would advise against treatment is that he realizes you NEED to stop drinking while on treatment for the meds to have effect. Otherwise, it just makes absolutely no sense at all.
You need to get a different doctor and hopefully help your husband to see how serious his condition is.
I have NEVER in my life heard anybody judge whether they need to treat or not on a bilirubin count.
The main piece of information we use to determine if we NEED to treat right now or not is our biopsy results. At stage 3...it's a conclusion that he needs to. Bridging fibrosis is stage 3. And that was many years ago. Adding the alcohol on top is like taking a magnifying glass and putting it on a flies wings in the sun...........it's going to burn his liver out no two ways about it. NO DOUBT.
I would be honestly shocked if he was not well into cirrhosis right now already.
you really really REALLY need to get him help asap. I'm an addict by nature..........quitting drinking/drugs is NOT an easy thing. I was fully asymptomatic.....- I am a stage 3 myself. But if you stop and realize that you are REALLY going to end up in end stage liver disease and death shortly...and you HAVE to face it well...........it helps give you the courage to do what you need to do.
I pray to God that you can find a way to explain this to him. I watched two friends die of end stage and one of liver cancer...............it's something WAY worse than having to quit drinking. Believe me it's not a pretty thing at all.
Good luck.
You do realize what those Alt/Ast numbers mean? When a liver cell dies it releases an "enzyme". So...the higher the enzyme number the more cell death. As you can see if there was a good deal of irreversible liver damage already done ... the number could go DOWN.
I was the same diagnosis as your husband. I went to two doctors one of whom is one of the leading heptologists in the world. At stage 3 there is really no time to wait. One more stage until cirrhosis. I was advised to treat immediately and as hard as I could. I ended up doing 72 weeks.
I find it hard to believe that any doctor could responsibly suggest to you that a stage 3 who continues to drink need not treat. The only reason I can think that he would advise against treatment is that he realizes you NEED to stop drinking while on treatment for the meds to have effect. Otherwise, it just makes absolutely no sense at all.
You need to get a different doctor and hopefully help your husband to see how serious his condition is.
I have NEVER in my life heard anybody judge whether they need to treat or not on a bilirubin count.
The main piece of information we use to determine if we NEED to treat right now or not is our biopsy results. At stage 3...it's a conclusion that he needs to. Bridging fibrosis is stage 3. And that was many years ago. Adding the alcohol on top is like taking a magnifying glass and putting it on a flies wings in the sun...........it's going to burn his liver out no two ways about it. NO DOUBT.
I would be honestly shocked if he was not well into cirrhosis right now already.
you really really REALLY need to get him help asap. I'm an addict by nature..........quitting drinking/drugs is NOT an easy thing. I was fully asymptomatic.....- I am a stage 3 myself. But if you stop and realize that you are REALLY going to end up in end stage liver disease and death shortly...and you HAVE to face it well...........it helps give you the courage to do what you need to do.
I pray to God that you can find a way to explain this to him. I watched two friends die of end stage and one of liver cancer...............it's something WAY worse than having to quit drinking. Believe me it's not a pretty thing at all.
Good luck.
Your husband is not doing himself any favors by continuing to drink alcohol.
Below lists the stages of fibrosis. 7 years ago he was 1 stage off Cirrhosis.
F0 = No Fibrosis
F1 = Mild Fibrosis
F2 = Moderate Fibrosis
F3 = Bridging Fibrosis
F4 = Cirrhosis
F3/F4 are considered severe fibrosis.
Heavy Alcohol consumption with HepC can speed up progression.
If he wants to keep his Liver, He should stop drinking now!!
He is taking one hell of a risk.
He should be looking into having another biopsy to see if further damage has occured.
Blood Test markers are not that reliable.
If he waits until he feels sick it will be too late. Cirrhosis is largely irreversible.
With successful treatment it may regress.
All the Best
CS
Below lists the stages of fibrosis. 7 years ago he was 1 stage off Cirrhosis.
F0 = No Fibrosis
F1 = Mild Fibrosis
F2 = Moderate Fibrosis
F3 = Bridging Fibrosis
F4 = Cirrhosis
F3/F4 are considered severe fibrosis.
Heavy Alcohol consumption with HepC can speed up progression.
If he wants to keep his Liver, He should stop drinking now!!
He is taking one hell of a risk.
He should be looking into having another biopsy to see if further damage has occured.
Blood Test markers are not that reliable.
If he waits until he feels sick it will be too late. Cirrhosis is largely irreversible.
With successful treatment it may regress.
All the Best
CS
Sorry to hear of your predicament. You seem to have a few problems, so lets break them down.
1)Your hubby hasn't gotten any recent tests so you truely don't know where he sits in terms of liver damage.
2) He has thus far refused to treat, and
3) you feel that he drinks too and it is likely to have a negative effect on his liver staging/damage progression.
First, you might suggest either a "fibrosure or fibrospect" blood test for him to get an approximate "read" on his liver damage. These are non-invasive tests which are reasosnably accurate at measuring liver damage. The cost might be about 350 dollars, its a simple blood draw that could be done at his next check up or you can suggest that it's what you want for your birthday. : ) You get results in a week and approximate liver staging. My cost after insurance was about 25 bucks. If his results are good you'll feel better and likely so will he; perhaps enough to do it on a yearly basis along with other tests. If the results were poor...it may prompt him to take some actions on your other 2 issues with him; treating or drinking. Poor test results might also prompt further testing such as a new biopsy.
Second, based on the results you may find that he can put off treatment for a while or it may suggest that he may need to start soon. At the minimum it will serve as a starting point for conversation. This forum has many answers to any questions you might have about starting TX. There are also many trials that are opening up with some potentially excellent treatments available as well. He may also be fine waiting if his liver staging looks good..
Finally; alcohol. The test will also provide you a basis for comparison. How is he now compared to how he was 7 years ago? Even if you don't immediately treat I think that this could mentally prepare one for the posibility. So far as alcohol enters the equation you may find that he hasn't progressed significantly and therfore you may be put at ease more about his alcohol intake. On the other end of the spectrum if his tests were poor he may have to come to grips with the potential impact that alcohol is having on his HCV.
He may wish to "watch and wait" on treating but drink the same or less......
He may wish to watch and wait on treating but quit alcohol and see if his tests or fatigue improves.
If he were to decide to treat many doctors would want him to be alcohol free perhaps before but certainly during treatment.
IF there were an issue about his ability to reduce or quit drinking (if he wants to of course) you could also face counseling, substance abuse help or clinic either in or out patient. Understand I'm not diagnosing; I'm just laying out options.
These are actions that he has to take. They are his decisions even though you are married. You can let him know how important his health and well being is to you and your family. As with many step...... it might be easier to start with the most simple one and see how that goes.
...also.....
There are many threads on this board about alcohol use while having HCV. You can use the search function and pull some up, no doubt. You'll get a lot of feedback and some useful opinion and data along the way.
best,
Willy
1)Your hubby hasn't gotten any recent tests so you truely don't know where he sits in terms of liver damage.
2) He has thus far refused to treat, and
3) you feel that he drinks too and it is likely to have a negative effect on his liver staging/damage progression.
First, you might suggest either a "fibrosure or fibrospect" blood test for him to get an approximate "read" on his liver damage. These are non-invasive tests which are reasosnably accurate at measuring liver damage. The cost might be about 350 dollars, its a simple blood draw that could be done at his next check up or you can suggest that it's what you want for your birthday. : ) You get results in a week and approximate liver staging. My cost after insurance was about 25 bucks. If his results are good you'll feel better and likely so will he; perhaps enough to do it on a yearly basis along with other tests. If the results were poor...it may prompt him to take some actions on your other 2 issues with him; treating or drinking. Poor test results might also prompt further testing such as a new biopsy.
Second, based on the results you may find that he can put off treatment for a while or it may suggest that he may need to start soon. At the minimum it will serve as a starting point for conversation. This forum has many answers to any questions you might have about starting TX. There are also many trials that are opening up with some potentially excellent treatments available as well. He may also be fine waiting if his liver staging looks good..
Finally; alcohol. The test will also provide you a basis for comparison. How is he now compared to how he was 7 years ago? Even if you don't immediately treat I think that this could mentally prepare one for the posibility. So far as alcohol enters the equation you may find that he hasn't progressed significantly and therfore you may be put at ease more about his alcohol intake. On the other end of the spectrum if his tests were poor he may have to come to grips with the potential impact that alcohol is having on his HCV.
He may wish to "watch and wait" on treating but drink the same or less......
He may wish to watch and wait on treating but quit alcohol and see if his tests or fatigue improves.
If he were to decide to treat many doctors would want him to be alcohol free perhaps before but certainly during treatment.
IF there were an issue about his ability to reduce or quit drinking (if he wants to of course) you could also face counseling, substance abuse help or clinic either in or out patient. Understand I'm not diagnosing; I'm just laying out options.
These are actions that he has to take. They are his decisions even though you are married. You can let him know how important his health and well being is to you and your family. As with many step...... it might be easier to start with the most simple one and see how that goes.
...also.....
There are many threads on this board about alcohol use while having HCV. You can use the search function and pull some up, no doubt. You'll get a lot of feedback and some useful opinion and data along the way.
best,
Willy
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